Our Library is your go-to resource hub, offering a curated collection of educational materials to support families, caregivers, and donors. Here, you’ll find access to conferences, webinars, interviews, and videos covering a range of topics, from daily care strategies to inspiring success stories. Whether you’re looking to learn more about Angelman Syndrome, explore expert insights, or discover community experiences, this is the place to start.
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As research into Angelman syndrome continues to move forward, many families are beginning to think about clinical trials and what taking part might mean for them.
We know this can feel exciting, but also a little overwhelming.
The aim of this page is to bring together trusted information that will help you better understand the clinical trial process, the language you may hear, and the questions you might want to ask. We hope these resources will help you feel informed and prepared, whatever stage of the journey you’re on.
This 30-minute presentation was delivered by Dr Allyson Berent, Chief Science Officer at FAST Global, during the FAST Global Conference in November 2025.
Dr Berent explains:
How clinical trials work what families should know before considering participation
the current Angelman syndrome clinical trial landscape what to expect over the coming years.
Presentation Slides:
Download the accompanying slides to follow along with the presentation or refer back to key information at your own pace.
Download: HERE
This community webinar, hosted by FAST and the Angelman Syndrome Association (ASA), features representatives from Ionis and Ultragenyx discussing Phase 3 clinical trials in Europe and the UK.
Topics include:
Roadmap to a Cure – Family Guide to Angelman Syndrome
Our Roadmap to a Cure Family Guide includes a dedicated section, “From Benchside to Bedside: Understanding Clinical Trials,” which explains:
For the latest information on registered clinical trials, study locations and sponsor contact details, visit: https://clinicaltrials.gov/
Clinical trials often involve scientific and medical terms that may be unfamiliar. We’ve created this glossary to help explain some of the words and phrases you may come across when learning about Angelman syndrome research and clinical trials.
A person’s genetic makeup. There are five recognised genetic causes (genotypes) of Angelman syndrome:
Imprinting is a natural process where only one copy of a gene is active, depending on whether it was inherited from the mother or the father. In Angelman syndrome, the paternal copy of the UBE3A gene is naturally switched off (silenced) in brain cells, meaning only the maternal copy is normally active.
A procedure in which a needle is inserted into the lower back, between the bones of the spine, to collect cerebrospinal fluid (CSF), administer medication or carry out medical tests. It is sometimes referred to as a spinal tap.
A research study that follows people over time without giving an experimental treatment. It helps researchers understand how Angelman syndrome changes naturally and provides important information that can be used to design and measure future clinical trials.
The tests or assessments used to determine whether a treatment has made a difference. They are usually carried out before treatment begins to provide a baseline and are repeated afterwards to measure any changes.
A treatment that contains no active medicine. In some clinical trials, a placebo is used to compare against the study treatment so researchers can better understand whether the treatment is having an effect.
A pretend medical procedure used in some clinical trials so participants do not know whether they received the active treatment. This helps ensure the trial results are as fair and unbiased as possible.
UBE3A is the gene responsible for Angelman syndrome. Most people have two copies of this gene, one inherited from each parent. In the brain, however, only the copy inherited from the mother is normally active. Angelman syndrome occurs when the maternal copy is missing or not working properly and the paternal copy remains naturally switched off.
Disclaimer: The definitions above have been simplified to explain how these terms relate to Angelman syndrome. They are intended as a helpful guide for families and should not replace the full scientific or medical definitions used by researchers or healthcare professionals.
Understanding Angelman syndrome can feel overwhelming at times, whether you are newly diagnosed, supporting a loved one, explaining the condition to others or simply looking to learn more.
This section brings together a range of helpful, easy-to-access educational resources from across the Angelman syndrome community. From basic genetics information and family-friendly science guides to lived experience stories and research updates, these tools are designed to support families, carers, professionals and anyone wanting to better understand Angelman syndrome.
Our FAST Science Booklet for Families presents Angelman syndrome research in a simple, visual, and accessible way. This booklet helps families understand current studies, scientific approaches and what research means for the community. You can now explore the digital version as a flipbook.
Educational webinars on topics such as Augmentative and Alternative Communication (AAC), behavioral strategies, and anxiety management.
School friendly resources designed to help children and young people understand Angelman Syndrome in an age-appropriate, engaging way. Whether you’re a parent, teacher, teaching assistant, or young carer, these presentations are tailored to support learning and inclusion at every stage of education.
Sessions from various years, covering topics like behavioural and anxiety concerns in Angelman Syndrome.
Content from the 2016 symposium addressing specific genetic aspects related to Angelman Syndrome.
FAST provides a comprehensive, regularly updated overview of all therapeutic approaches in development for Angelman syndrome, from gene therapy and paternal gene activation to downstream pathway treatments, showing the full global pipeline of research progressing toward effective therapies.
A collection of resources designed to support healthcare professionals in managing Angelman syndrome. These materials include guidance on the diagnostic pathway and best practice care following diagnosis, helping clinicians provide informed, coordinated support for individuals and families.
There are many disorders that will not be cured or treated in our lifetime, but Angelman Syndrome will not be one of them. at FAST UK